Hello, March.

Kerissa • March 3, 2016

Wow, it’s been a whole month since I last posted here.  Did you miss me?

February was very rough, and I’m glad I can now look back on it.

Here are all the latest appointment updates.  Beware, this is super long!!  If seeing doctors was my full time job, I’d be rich.  For those on facebook who already read my “mito” update, just scroll down to pass that one.

Mitochondrial medicine (posted Feb. 16th):

1. My hypomagnesemia is related to the mitochondrial disease—a lot of his patients deal with the same thing and need daily IV fluids with magnesium just like me. Still going to be seeing nephrology at OHSU on the 29th.
2. He wants my doctors to aggressively treat the Wilson’s Disease and start me on another chelating drug in addition to the Zinc Acetate I’m taking. Unfortunately, there have been no studies showing that WD causes a mitochondrial depletion (which was found on my muscle biopsy). This means treating WD probably won’t help improve the mitochondrial symptoms, but he’s still interested in how treatment goes!
3. He is going to ask the lab to check my whole exome sequencing analysis (done last year) for Wilson’s Disease gene abnormalities.
4. I will be starting Alpha Lipoic Acid in addition to my other mitochondrial co-factors and antioxidants.
5. He thinks that in the next 2-3 years, I’ll be eligible for a drug trial. So far, one that he’s involved with looks promising.
6. I’m dealing with another painful jejunostomy feeding tube infection…  Thankfully I didn’t have to go to the ER here! He was able to prescribe antibiotics for me, but he said I need to follow-up with my GI surgeon right when I get back!
7. One more thing, he said he won’t forget me and that I’m very memorable!

GI Surgery :

I followed up with my GI surgery team the day after I got back from San Diego.  To my surprise, I had to have a small unexpected surgery called “incision and drainage” at the site of my j-tube infection.  It was very painful, and for several days after that, I had to pack the wound with gauze twice a day.  The resident cultured the abscess, and we received results the same day I was in Seattle on the 22nd to see my pain dr.  My cultures grew a bacteria called Enterobacter Colacae Complex, so I was switched to a different antibiotic.  I was on antibiotics for a total of 11 days.  Thankfully, the infection is now gone, but my j-tube site is raw and super painful due to bile leakage.  This has been a problem since November, so my GI surgeon referred me to Wound and Ostomy Care.  Haven’t seen them yet, but hopefully soon..

Neuro-Ophthalmology :

The ophthalmoplegia (eye muscle paralysis) in my left eye is stable which is good news.  The vision in my right eye is continually getting weaker, though.  My right eye is either working too hard because my left eye doesn’t move well, or this is due to the copper accumulation from Wilson’s Disease..

Pain Medicine :

It was soo good to see my pain dr. at the UW Medical Center on Feb. 22nd.  He gave me a big, long hug!  For those who don’t know, he’s my favorite doctor out of all.  He spent over an hour and a half with me.  From the appointment and neuro exam, he came to the conclusion that I’m currently not dealing with Complex Regional Pain Syndrome.  He thinks I have Small Fiber Polyneuropathy which is very similar to CRPS but also indicates nerve damage.  The plan is to try and switch to a different and new medication….similar to the one I’m on, but he’s seen better results.  I’ll also be getting another bilateral lumbar sympathetic block, but it will be done here at OHSU.  We talked about Spinal Cord Stimulation, and sadly, he doesn’t want to put one in yet because my health isn’t stable, I’m on IV nutrition, and I just got over an infection…all big risks.  If I were to get an infection in my spinal cord from the surgery, he would never be able to forgive himself.  I trust him completely and understand, but I AM disappointed….hopefully things look up and I can get one down the road!

Gastroenterology:

I had a GI follow-up after we got back from Seattle, and my dr. ordered lots of blood work to be done to check on all my vitamin levels and minerals since I’m on TPN.  We should get results on Friday.

Hepatology:

My GI dr. spoke with my hepatologist a couple weeks ago.  He said that my hepatologist will be calling sometime soon to tell me that he wants to repeat some Wilson’s Disease tests.  He wants to see how the Zinc therapy is going and if it’s helping remove copper from my body.

Nephrology: 

I saw my nephrologist for the first time this past Monday, and she is amazing!  So blessed to have her on the team.  She ordered lots of lab tests to be done tomorrow to try and get to the bottom of why I’m dealing with Hypomagnesemia.  I really want to cut back on my IV fluids with magnesium, but that’s going to be hard to do if my level keeps dropping.  Hopefully these tests give us some answers.  She’s looking into 2 kidney disorders, and I pray I don’t have either.  I don’t think I can take another diagnosis!!

Pulmonology:

Today I saw my pulmonologist for the first time to assess my weak respiratory muscles.  I had another pulmonary function test, and we compared the results with the one done at Cincinnati Children’s.  It wasn’t good news.  One of my values showing lung strength decreased from 72 to 46.  That’s a big decrease, and this level is seen in chronic respiratory failure.  So I have to get another PFT done in 6 months to keep an eye on this.  Taking it one day at a time, and I know I’m in the Lord’s hands.  Here is something good—all my other pulmonary tests (including chest x-ray) are normal.

By Kerissa Lee November 17, 2025
Dear friends, Thank you so much for praying for me when I had that bad reaction to the autoimmune medication last month. I’m so incredibly blessed by your love and support. ❤️ I saw rheumatology recently, and instead of trying to prevent actual autoimmune disease from starting, they want to just monitor without any medication therapy. In other words, they want to see if more symptoms like fevers or rashes will appear (besides the joint pain that I already experience).. The medicine I did try (which worsened my mitochondrial symptoms) is actually the “safest” out there, and the other treatments for autoimmune disorders are much harder on the body—the team doesn’t think I’ll tolerate those well.. It’s difficult for them to know if all the bad antibodies that have been found in my blood will cause “actual” disease, and only time will tell.. So the plan is to just monitor and follow up with them in February. I wanted to see if my body could recover from this setback without having my IV fluids switched to a higher dextrose percentage. But by the last week of October (week 3 of this mitochondrial flare), the muscle weakness and increased pain all over was sadly still persisting, so I told my doctor. He sent in a new IV fluids order with the higher dextrose, and I’ve been receiving it for about 2 weeks now. I have definitely noticed an improvement in the muscle weakness which has been a huge blessing from the Lord. It was such a gift to feel well enough to go to a friend’s wedding reception at my church last week. 🥹 My cup was filled because I haven’t been able to see so many church friends in years! Regarding the piece of plaque that traveled to a small artery in my retina, I just had the carotid duplex scan completed last Tuesday to see if there’s any narrowing in the neck arteries. I also have the heart echocardiogram scheduled for tomorrow. My biggest, ongoing struggle has been my sleep. I’ve sadly been in a “catch 22” situation for many months now. I mentioned before that I was started on a new and safer pain medication this year. A rare side effect is insomnia, and it’s simply horrible. Night after night, every single day, I’m not able to fall asleep until after 4-6 AM. 😢 Believe me, I’ve tried every type of trick…from different sleep medications that my sleep specialist has prescribed, to all sorts of sleep supplements, praying, listening to worship music or white noise, stopping caffeine intake, etc. Nothing helps. The thing is, if I didn’t take this “new” pain medication, the pain from Mitochondrial DNA Depletion Syndrome is difficult to manage and it’s like an 8-9 on the pain scale. So then I’m up through the night, in horrible pain, and not able to sleep. But when I do take this medication, the pain is manageable, and it’s much safer to be on... Yet, I can’t sleep well while on it... Catch 22. I don’t know what to do, and it’s hard not to feel alone in this struggle. I’m so thankful to God that my health in other areas has been pretty stable.. In fact, this month (November) marks ONE WHOLE YEAR since I was last admitted to the hospital! Isn’t that soo amazing? Aside from these occasional mitochondrial flares/crashes (which happened in December, May, and October), I’ve been doing incredibly well, now that the neck weakness has resolved. But, this sleep struggle persists day after day.. I would love to be able to attend my church’s morning service in person or do many other activities in the morning. 😞 But I’m super exhausted. So many times, I ask God, “How do I go on and keep doing this every single night?” One thing I’ve learned is that God’s grace is truly sufficient for each day. He is the one who supplies me with the energy and grace to keep enduring. It’s hard, and I don’t know how long this sleep trial will last.. But, as Thanksgiving draws near, I’m reminded that I do have so much to be thankful for. Some of the biggest things: being physically able to help babysit my 4-month old foster nephew, shopping at the grocery store, having hand strength to design new note cards like the ones shown here, no longer experiencing neck weakness, and much more. The verse from Zephaniah I recently hand lettered above has been so encouraging lately. God is right by my side; he is mighty to save and will keep helping me through anything that I face. ❤️ 
By Kerissa Lee October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️
By Kerissa Lee October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3